Saturday, July 3, 2010

Saturday, July 3, 2010

Tonight's picture was taken on July 4, 2006. Mattie, Peter, and I were invited to spend the fourth of July on Zachary's family's boat. As many of you know, Mattie and Zachary were very close buddies in preschool and were practically inseparable. Mattie loved seeing the fireworks from the boat and talked about it for many years later. It was a memorable experience to actually be so close to the fireworks and to have the Washington monuments as our back drop.


Poem of the day: Beginning by Karen O'Leary


The pain rolled
over me knocking
me off my feet
like a tidal wave.
The dawn came.
The heavens opened,
bringing the light
of hope.
Under His guidance
I stood, taking
one shaky step
ahead.
It was the beginning.


Now that we are firmly into July, I find that my feelings about the month have changed. In the past, I always loved this month. July means summer to me, and I love the warm weather. My birthday and wedding anniversary also fall within July, so in the past these occasions made the month quite festive. Now however, July signifies the month Mattie was diagnosed with cancer, July 23, 2008 to be specific. I will never forget that day, or the traumatized feeling I had on that day, a feeling that only continued for many weeks thereafter. The feeling of shock that I felt back then remains entrenched in my mind. So much so, that while Mattie was in treatment, the seasons obviously changed. His chemotherapy went through the summer, fall, winter, and spring. However, in my mind, I was trapped in the summer of 2008. The seasons and temperatures were changing around me, but not in my head. It is like time stopped for me when Mattie was diagnosed. Not sure how to accurately describe this, other than once the crisis began, everything else for me stopped. Life, seasons, time, eating, and the list goes on. Everything was dispensible to me as I was caring for Mattie.

I woke up this morning exhausted. It isn't a good feeling to start the day off this way. My flu symptoms have improved and practically disappeared, but the fatigue and achiness are still with me. Peter and I had hopes of walking today, but I simply wasn't up to it.

We saw our neighbor, JP, today. JP was out walking JJ, our resident jack russell terrier. JJ and Mattie were good buddies and practically grew up together. JP let me know that JJ and Lola, JJ's "significant other," will be having puppies very soon. I know this news would have brought Mattie great joy. Mattie always wanted one of JJ's puppies, and JP always told Mattie if he worked hard at regaining his strength and learning to walk again that he would give Mattie one of JJ's puppies. It was an incentive Mattie really liked! It is a sad commentary that Mattie left us before he got a puppy of his own.

Peter and I ate dinner outside on the deck tonight. We were surrounded by our flowers, tomatoes, herbs, lemon tree, and the of course Mattie's fountains. We are in the city, but our deck makes us feel disconnected from city life. While eating, Peter pointed out how as the sun was setting, it changed the hues on the building in the distance. He had me stare at it and we talked about how the colors were rapidly changing and in the process the building looked quite different with each color change. I told Peter that he is a real impressionist at heart, not unlike myself. Afterall the founders of the impressionist movement valued the use of light at capturing the depths, movement, and complexities of simple objects and scenes. It was a very unplanned dialog, but we both got a kick out of it.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I understand your anger at the phrase "new normal" but as you said, it doesn't disturb everyone the same way. Everyone who is walking in grief seems to have their own phrase that sets them off when they hear it. The best thing we can do is to be sensitive to others and their feelings about how they wish to express what confronts them. I think that your crying when you heard what Tanja said was to be expected. It is one thing for someone to say they remember your loved one and another to remember and honor something about them. That brings it to a whole new level. To clarify it for those readers who might not understand, some time after my mom passed away, a friend said he had gone to watch Jai Lai (my mom loved that) and that he bet her numbers (4-1) when he noticed one of her favorite players in the game wearing one of the numbers she liked. I found my eyes filled with tears not just because he remembered her but that he had given me the gift of a specific memory that might have gotten away from me. That's the difference. What I love about children (Abigail in particular) is that they freely share what they are thinking without all the censors that often remove the love and caring from what we say in hopes of making things less painful (which doesn't work). I am glad you and Peter finished out the day by sharing your experiences and feelings; that's so important in staying close through the grief process. As I practice this weekend I will send you my energy to help you get through the holiday; I know you will see those fireworks and miss Mattie's reaction to them. I firmly believe he is running his own show elsewhere and it is far beyond what any of us can imagine. I hold you gently in my thoughts."

Friday, July 2, 2010

Friday, July 2, 2010

Tonight's picture was taken in July of 2007. Mattie was five years old. He climbed one of his favorite rocks at Roosevelt Island, and we snapped a picture of him at the top. Mattie was always a very cautious child, however, after spending two years in preschool, he began to venture out beyond his comfort zone, and learned to enjoy climbing, jumping, and running around. Roosevelt Island was a special place for Mattie, and continues to hold special meaning for Peter and I. It is hard to believe three years ago Mattie was healthy, happy, and seemed to have a bright future ahead of him.

Poem of the day: Losing a Piece of Me by Tammie Thompson

Imagine someone has opened your chest with clawed hands,
grabbed your heart in a crushing grip and torn it from your body.
But you do not die. You remain alive, in agony.
Agony that will continue for days,
weeks, months and years.
This is what it feels like when your child dies.
This is how I felt when my son Dale died,
age two years and one day.
To hold the limp body of my precious child in my arms
and feel its emptiness was pain that defies words.
I sat cradling my beautiful child, knowing that I
would never again see his smile,
hear his laugh
or feel his hand clinging to mine.
I would never again hold his warm body close and
breathe in the scent of his hair. I would never
know the person he would have grown up to be.
I walked from the room knowing that I had seen
and held my child for the last time ever.
I wondered why I still lived,
and how I was supposed to keep going.
I wanted to die; I wasn't suicidal - it's just that
the only way to end my pain was death,
and I ached to hold him in my arms again.
Never again will I feel 'whole'.
My whole future is flavored by the loss of my son.
A part of me went with him,
and a gaping hole exists that his warm
presence once filled.
I asked questions that no one could answer;
Why did he die?
Why not me instead?
Death has struck close to me once -
what if it happens again?
What do I do now?
How will I manage?
Why am I still here?
I rode an emotional roller coaster.
One moment I felt I was managing well -
the next I was curled up in a corner
pleading with God to take me, right now.
I went for long periods where I did well and thought,
"Okay, I've accepted it."
Then out of the blue, it hit me anew -
"He's dead. God, he's really dead."
And I began a new round of grieving.
Gradually, I found that the lows
weren't quite as low as the previous ones,
and that I rose from them quicker.
Then just when I thought I was cruising on a level piece of track,
it dropped out from under me yet again.
I did this over and over and over,
but living with it gradually became easier,
and I even found that I could live a 'normal' life again,
although it was a new normality.
I will never forget Dale.
He will live forever in my heart
and in my memories.
Death makes him no less a part of our family.
Living with the fact that my child has died
does not mean forgetting.
It means knowing and accepting that he is gone,
but still holding close those precious memories.
It means that my love for him does not change,
but that I don't allow my grief for his death
to over-rule my life forever.
It's about remembering that Dale would not expect
nor want me to spend the rest of my life
in misery.
My new normality is not necessarily an unhappy one.
Dale's life and death is part of what makes me who I am.
It has had an immense impact on the way I look at life,
and although I wish he was still here,
I know that I have grown from my experience.
Dale's official date of death is the 2nd of January, 1995,
the day he was taken off life support,
but I tend to think of the real date of his death
as the 31st of December, 1994,
the day he drowned.
Even though his heart had been started again,
he was gone.
As I write this, it's the 30th of December, 1998;
Dale's 6th birthday.
I wonder what he would look like now,
and imagine him playing with his brothers,
even as I sit here writing about his death.
We tend to celebrate his birthday rather than his death-day.
To us it's more important that he was born than that he died.
We choose to celebrate his life,
not his death.
It means more to us
that he was here
than that he left.
Remember?
Always.
Love?
Eternally.
Forget?
Never

Losing a piece of me is a poem that speaks very loudly to me. I relate to the pain this mother is expressing, however, for those of you who have managed this long journey with me most likely know the two words that set me off in this poem. If you guessed, "new normality," then you get a gold star. There is something about that terminology that rubs me the wrong way. I did not care to hear it when Mattie was first diagnosed, and I certainly do not care to accept it now that Mattie is gone. If you look up the word normality in the dictionary, you will see that it means specifically: conforming to the standard or the common type; usual; not abnormal; regular; natural. Keeping that in mind, you can clearly deduce that there is NOTHING normal or natural about a child developing cancer and/or dying. You will find no example of either of these issues next to the word normal in the dictionary. Therefore to tell me to psychologically accept cancer and Mattie's death as my "new" normal is beyond absurd, it is insensitive. Clearly this terminology doesn't incense other parents in the same manner as it does me, but you can rest assure that I will NEVER be using this phrase when working on behalf of the Foundation to help children and their families through their cancer journey.

Despite waking up and feeling extremely fatigued, I decided that I was going to get up and out of bed today, and go visit Ann and her mom, Mary. Before meeting up with Mary, I went to Ann's house to check on her garden. I was worried about my green friends while I had been sick this week and unable to care for them. While I was outside weeding, I met up with Ann's neighbor, Tina who was walking her dog. Tina introduced me to Max, her labradoodle. Max and I got along splendidly and Tina tells me that Max doesn't relate to everyone. Pretty soon, other dogs in the neighborhood came in to join in our social circle. It was actually funny for me to see the beauty of living in the suburbs, where people stop to chat and connect. A thing that rarely happens in the city, or at least in my area.

While shopping with Ann and Mary, I saw my friend, Denise by happenstance in the store. Today was a day about connections. Though Denise and Mary never met before, Denise was very familiar with Mary, since she is an avid blog reader. In a way, the blog has established a virtual "Mattie" community.

Ann took Mary out to lunch and in the process also invited several other friends along. This was actually wonderful stimulation for Mary to hear all of us talking and interacting with each other. Mary has known many of Ann's friends for years, so in a way it was nice for Mary to hear how these women and their children are doing. While at lunch I chatted with Tanja and Tina. Tina and I were sharing stories about making preserves and jarring them. I learned to do this by watching Peter's mom, who can transform just about any fruit into a tasty jam or preserve. So Tina and I traded stories and had the opportunity to learn more about each other. Tanja was telling us about her pet bird, Ginny. Mattie happened to love Ginny. Tanja then went on to tell me that she still collects Ginny's feathers. I looked at her for an explanation, and she reminded me that Mattie loved Ginny's feathers and in honor of him she still collects his feathers in a ziploc bag. Maybe because I haven't been feeling well, or maybe because I was struck by how Tanja remembered this, I started to cry. Tanja is used to my crying, but I observed the other women around me not knowing how to react. Mary, from across the table, also observed me crying, and not much had to be said. I could see she got it. Mary spoke to me alone at various points today. She asked me if I thought it was possible to wake up in the morning and already know that it is going to be a bad day? When she says 'bad,' she means that her feelings about her son's death will be overwhelming. I told Mary I understood and I definitely had and have many of those days. Toward the end of the visit, she also told me that she doesn't think that she and I can ever truly be happy again. That may sound depressing to an outsider to hear, but for those of us in the inner circle (of having lost a son; a circle none of us every wanted to add to our resumes), this sentiment is real and very understandable.

Later in the day, I went with Ann to pick up her youngest daughter, Abigail at camp. Abigail was enrolled in a nature camp near her home, and I had the opportunity to walk through parts of this lovely preserve. Abigail was very excited to show her mother what she made in camp throughout the week, and even walked us into the woods to show us the fort that she and her group build on their own. While waiting for Abigail to pack up her things, I observed all the children running around and the parents admiring what their children created. In a way, it is in those moments that I feel as if I am in slow motion. As if the world is functioning around me, and yet I am seeing things in snapshots and still pictures. In a way, I have been removed from this parent world, and when I try to walk into it, internally it feels awkward and uneasy. I had parents try to talk to me today about my child in the camp, I had counselors asking me which child was mine, and I answered politely, but thought..... wow if you only knew my real story. On the way back to the car, Abigail told me that she thought Mattie would have really loved this camp. She is most likely correct!

In fact, I know that Ann really wanted Mattie to attempt this camp in the summer of 2009. Or at least this was her thinking before we learned that the cancer took over his body. The beauty of Ann throughout this process was she was a ray of hope for us. Peter and I couldn't think about the summer or the future, but Ann could. She would always have me envision Mattie's high school graduation and prom. In the beginning I tried to go there, but in the course of the battle, I realized my mindset changed. In fact, my thoughts were quite accurately reflected in a passage from the book, My Sister's Keeper. In the book, the girl with leukemia is named Kate. This is what Kate's mother says, "When Kate was born, I used to imagine how beautiful she would be on her wedding day. Then she was diagnosed with APL, and instead, I'd imagine her walking across a stage to get her high school diploma. When she relapsed, all this went out the window: I pictured her making it to her fifth birthday party. Nowadays, I don't have expectations, and this way she beats them all." With Mattie's cancer, I too learned to have no expectations. That way, each crushing blow that was dealt to us during his battle did not cause additional heartache. I see that my thinking is probably in line with other mothers whose children have cancer. With that said, I did not belittle what Ann or others were telling me. I too wanted to have hope, but I learned that sometimes hope is not enough. Just living in the moment of fighting the battle that present day was all I could do.

Peter and I went out to dinner tonight, and we shared stories about our day and how we are feeling about this upcoming weekend. Peter and I visit our neighborhood restaurant often so we are familiar with the owners and everyone who works in the restaurant. Peter and I had a fascinating dialogue with one of the women who works at the restaurant. I don't care to discuss the specifics of the content, but needless to say, she got me thinking about a lot of things.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I grew up with Little House on the Prairie so I understand about becoming involved in the lives of the characters in the stories. I remember the storyline when Mary became blind and how it all worked out. I tried to imagine my life had that happened to me and I am sure I would not have dealt with it as well as she did. I am so dependent on what I see that it is very difficult to imagine how I would cope with life without sight. It was her existential crisis and she found her way to eventually becoming a wife and teacher of others who were also blind. It was not the life she imagined for herself but it was a life that had meaning for her and for others. I believe that is the only way to come through an existential crisis. My grandfather lost all of his family in the concentration camps. He had to find a way to continue on with his life and make meaning of it. I read a lot of Holocaust literature but I never found any answers there until I stumbled on some of Victor Frankl's quotes in other people's writings. Frankl concludes that the meaning of life is found in every moment of living; life never ceases to have meaning, even in suffering and death. "We can discover this meaning in life in three different ways: (1) by creating a work or doing a deed; (2) by experiencing something or encountering someone; and (3) by the attitude we take toward unavoidable suffering." You have to have faith that there is a future and that the future does hold meaningful work/events/relationships for both you and Peter. You have the inner spirit to do this; it is something akin to an internal "quest" to find what will bring you emotional satisfaction. As I practice today I will send you the energy to help you regain your health and continue your search. I hold you gently in my thoughts."

Thursday, July 1, 2010

Thursday, July 1, 2010

Tonight's picture was taken in July of 2003. Mattie was a year old. This was Mattie's first trip to the Outer Banks of NC. Peter and I loved going to the Outer Banks and we wanted to introduce the beach to Mattie early on. In true Mattie style, he did not like the beach for the first two years we visited it. However, by the third year, he began to love playing in the sand and the sound of the water crashing on the shore no longer scared him. Mattie had a strong personality, and I learned early on that persistence was the key to parenting him. I am happy that we persisted, because Mattie learned to love the water, building in the sand, and collecting seashells. All things that in my mind should be a part of a child's life. I still have many of his wonderful collections, and recently when I went with Ann to visit Charlotte's family by the beach, I brought home a huge pine cone. I am sure they all thought it was odd, because I did not explain why I was dragging this pine cone home. But the reasoning is plain and simple. The pine cone was something that Mattie would have honed in on and collected, and therefore, I collected it in memory of him and our trips together.

Poem of the day: Time Does Not Heal by Charlie Brown

Time does not heal
All wounds
It puts a lid
That sits lightly
On swallowed feelings
Of overwhelming grief
Sometimes that container
Has room for tears
And sometimes it is full
With hard, knotted anger
That cannot be voiced.
My heart holds both more
And less,
Than I thought possible.

Charlie's poem today sums it up beautifully. Or at least the analogy worked for me. Time is like a jar or a bottle. In this bottle sits my grief, my fears, my anger, and most of my emotions. Some days, the lid on the jar can open a bit to allow more feelings and thoughts inside. However, on most days in order to function the jar remains sealed. Lately, since I have been home feeling ill, I have found that it is harder to keep the jar sealed, and therefore, moments of intense sadness and bouts of crying slip out.

I woke up this morning with a fever and a cough. Because I was concerned that my recovery was slow and that we are moving into the July 4th weekend, I decided I better make an appointment at my doctor's office. Ann checked in with me, and she wanted Tanja to drive me to the doctor, but I decided to drive myself. It is funny, since Mattie developed cancer, I have much more strength to do things I never thought I could do before. While I was getting ready this morning, I was listening to the radio. The radio announcer was talking about the new George Strait song, and she told her audience that when we hear it, we should have tissues with us. I couldn't understand exactly what she was talking about, so I looked up the song she was referring to. I attached the link below in case you wanted to hear the song. The title of the song is, The Breath You Take. In the chorus of the song, is the line, "Life’s not the breaths you take, But the moments that take your breath away." I found this song very meaningful because it talks about the true purpose and mission in our lives. It is NOT the minutia, but instead the moments that capture our hearts and minds. For Peter and I what took our breaths away has now disappeared from our lives. So in a way Mattie's death leaves us with an existential crisis. What is the point our lives now?

George Strait's........ The Breath You Take
http://www.youtube.com/watch?v=VS5X2V5s58A

Visiting the doctor was an uneventful but tiring trip. She did not like the look of my throat, and therefore did a strep culture, which came out negative. So she deduced that I must have the flu. Apparently there is a strain of flu going around this summer, and I am the lucky one to catch it. She seems to think I will be feeling better by Sunday at the latest. I have two days of antibiotics to still take, but one thing is for sure, my head is heavy, I can barely keep my eyes open, and I have absolutely no energy at all.

This afternoon, as I have done for the past two days, I tuned into Little House on the Prairie. Today's episode just happened to be the one Karen and Peter told me about yesterday, when the eldest daughter in the family who is 15 years of age, becomes blind. For two hours I was glued to this show. I watched the parents deal with hearing this news about their daughter, Mary. I observed how Mary dealt with this news about her eyes and her future, and then had the opportunity to see how through education Mary was retrained to read and appreciate her life. It was a very heart warming and at the same time emotionally laden story. I went through seven tissues while watching this show, and had a royal headache after it was over. In one of the episodes, the father of Mary goes to church and his priest starts to talk with him. The priest says that God hears all our prayers, though our prayers are not always answered in the way we want. But that God has a reason for everything that happens. Clearly in this episode the purpose of Mary becoming blind was so that she would go to school and then help other children who are blind learn these same skills and function independently. Naturally this was a Hollywood moment, because in real life, the true lesson that God has in store for us isn't always clear, or at least not revealed SO quickly. I have no idea why Mattie was taken from Peter and I, and right now even if that secret was revealed, I am not sure I would care to or be open to hearing it.

Today was a day full of crying, as it related to my own feelings and those I observed. Karen asked me through e-mail why I torture myself in this way by watching such sad stories. The answer is, I am not sure. But I find it fascinating that I have never watched this show growing up, but now I tune into it, and it highlights all the issues I am contending with. It seems too coincidental for me. Based on all the crying I was doing today, Ann text messaged me and told me she was going to come over to deliver me more tissue boxes. It was the way she said it that made me laugh!

When Peter got home from work today, he made us dinner and we ate outside on the deck. We chatted about his day. He knew all about my day already, since I updated him periodically. I am happy Peter has a three day weekend, however, like any holiday, the fourth of July is also problematic for us. Actually any holiday without Mattie is hard. For many years we celebrated the fourth of July on the beach in North Carolina. Mattie loved all the excitement of seeing fireworks over the water. In certain years when we weren't in North Carolina, we celebrated the holiday in DC. One of the beauties of living in the city is right in our backyard we can see the amazing DC fireworks on the Mall. Mattie loved this fact, and this year as we will be home, I can't decide what we will be doing. The fireworks and festivities no longer have the same meaning for me.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I read what Nancy wrote about being ill from doing something for yourself. It reminded me of what one of the instructors said about squeezing toxins and stress out of the body when practicing. They have to go somewhere and so I presume they circulate in the body, and make one ill until your immune system (and perhaps medications) help remove them. It likely is the same with the massage. The stress and the grief sit in places within until you work them out and in their departure, they come to make one ill before they are banished (for a time). It is terribly uncomfortable but holding it all in, is more destructive in the long run. I really appreciated Nancy's poem as well; there are no answers to "why" but we all know you did everything you could and your head knows that too, even if your heart can't admit that. Animals are more sensitive than we like to admit and Patches clearly knows when you need her care. As I practice today I will continue to send you healing energy for both your heart and your body. I hold you gently in my thoughts."

Wednesday, June 30, 2010

Wednesday, June 30, 2010

Tonight's picture was taken in December of 2006, at Flamingo Gardens in Davie, FL. We spent New Year's with my parents in Florida that year. It was the end of our trip, and on the day pictured in this photo we were scheduled to return to DC. However, before we went to the airport, we squeezed in one more activity into the day. A visit to Flamingo Gardens. At the time this really seemed like an over programmed schedule, but looking back, all I can say is I am happy we did it. Mattie loved Flamingo Gardens, as do I, and sometimes you really do have to live your day like this is the last day you are going to have. Nothing is guaranteed and I look back at this trip with no regrets.

Poem of the day: TIME DOES NOT BRING RELIEF by Edna St Vincent Millay


Time does not bring relief; you all have lied
Who told me time would ease me of my pain!
I miss him in the weeping of the rain;
I want him at the shrinking of the tide;
The old snows melt from every mountain-side,
And last year's leaves are smoke in every lane;
But last year's bitter loving must remain
Heaped on my heart, and my old thoughts abide.
There are a hundred places where I fear
To go - so with his memory they brim.
And entering with relief some quiet place
Where never fell his foot or shone his face
I say, 'There is no memory of him here!'
And so stand stricken, so remembering him.

The poem, Time does not bring relief, is quite accurate. In fact, with time the feelings associated with loss and grief, especially of a child, become more intense and complicated. Therefore, my one main message to others is NEVER to use the cliché.... time heals all wounds. Time may change how the wounds feel, but the wounds will ALWAYS be there. To be honest though the memory of Mattie will always be with me, and the fact that he developed an aggressive and horrific form of cancer and then died, have been etched in my mind and heart. Therefore, unless I become impaired, my memory, these wounds, and our experience with cancer will always be a part of me. In a way the cliché time heals all wounds, is equivalent to asking someone to forget that they went to school, college, or graduate school. It just isn't possible. You build upon your education in life. With an education, you look at facts, figures, and problems differently. You have the skills to think them through and to process how best to develop solutions. Similarly, cancer has caused me to evaluate the world, people, and problems very differently. This is not something that will go away with time, instead it is a part of my life, just like my education, that I will need to somehow accept in order to continue living.

I had a rough night with 102 degree fevers. I finally did fall asleep, but I woke up feeling wiped out this morning. So I spent another day at home and in bed. I am unable to read because my head simply hurts and my eyes are blurry. Writing this blog is also challenging! So I spent another day listening to the television. I exchanged e-mails back and forth with my lifetime friend, Karen. When Karen and I were in 6th grade together, every friday night, we would watch Julia Child's cooking show. Karen was at her home and I was at mine, so we would be having lengthy chats on the phone about Julia. Julia Child was considered a great chef, but we weren't watching her for that skill, we watched her because she actually was funny. The way she talked to herself while cooking, and how she would drop pots and pans all around her, were simply entertaining to a 12 year old! The reason this triggered this memory today was Karen e-mailed me to let me know that Julia's episodes are airing in the afternoons on the Cooking Channel. That gave me a chuckle. Though I grew up in the age of the TV show, Little House on the Prairie, I must confess I never watched it. While watching the Hallmark channel today, I tuned into this show, which as many of you know is about the life and adventures of the Ingalls family in the 19th century American West. The moral messages in the show caught my attention, and therefore, for the past two days I have made up on lost time, and watched many episodes. In a way this show brought me back in time. A time when there was quality television, when there were wholesome shows for children to watch, in which parents were respected, listened to, and valued. Where children were more innocent and the lessons of hard work, community, and family were appreciated. I find it ironic that today's episode was about pregnancy. The mom in the family became pregnant with their fifth child. I learned that their fourth child, their only boy, died after being a year old. So the mother was desperately hoping that the fifth child she was carrying was a boy. No one around her seemed to understand her deep level of grief for her son, but I got it immediately, and I also understood why it was hard for her to be around her friend who just gave birth to a baby boy. I was captured by the content in the show, because though it was produced in the 1970s, I related to it very deeply in 2010. In my emails to Karen today, we talked about and forth about Little House on the Prairie. Karen was quite familiar with it and told me about the various stages the show went through over its ten years on the air.

Throughout the day, Ann text messaged me and called me periodically. I got the feeling she was concerned since it is unusual for a adult to get such high fevers. She told me that even Mary, her mom, is worried about me. Ann is taking her mom out to lunch this week, and is waiting for me to get better, because Mary has requested my presence at this lunch. In part, I think Ann tells me these things to give me a reason to get better and motivated to get out of bed. When Mary's helpers know that we are taking her out to lunch, several of them want to come along. Why? My gut feeling is they get a kick out of watching us all interact with each other. Ann and I alone can be a riot, then add Mary to the equation, and we are better than reality TV. So hopefully I will be better by tomorrow or friday to go out.
 
While I was in bed today a very rare occurrence happened. Patches, our calico cat, jumped on the bed and sat and slept right on my lap. Patches is not an affectionate cat, and certainly not loving with me. I am the utility player in this relationship. Nonetheless, over the years, when I have been sick, and Peter isn't home, she remains close to me. I will never forget the time I was in graduate school (pre-Mattie), and Peter was at work. I developed an 104 degree fever and was basically delirious. Patches stayed with me on the bed until Peter came home. Not that she could do anything for me, but she made me feel as if I was not alone. I never forgot that moment, and from that day forward I nicknamed her, "nurse Patch." So nurse Patch was on duty today and spent several hours with me. When Mattie came into my life, Patches stopped tending to me in this way, because Mattie filled that role. But Patches knows that Mattie is missing from our lives now, and I found it fascinating how she reverted back to her old behavior today. Mattie would have been proud of her. 

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am sorry you were ill yesterday and I hope that you are feeling better today. I know that you were overwhelmed several times this weekend and grief brings with it an assault on the immune system and often results in illness. I am glad that you have Dr Bob to turn to for assistance so that you are not stuck in some waiting room hanging about until you can be seen. As I practice today I will send you healing energy so that you feel better soon. I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "We got home today from our trip. After taking care of laundry, paying bills, doing some other chores, and wrapping up some loose ends, some stay unwrapped for another day. I wanted to check the blog. We returned too late last night to write, so here I am today. I know I missed most of the week, yet, the last two days bring much to comment on. I am glad, too, that Junko got you to go out and do something just for yourself. Your massage must have really stirred energy in your body as you awoke ill yesterday. Seems a paradox, to spend this wonderful time with Junko and doing something just for you, and then become ill. Yet, it had to happen to send this wake up call that you need to stay healthy even though you feel that Mattie wasn't able to get better. Grief is so strange. It does come on us when we least expect it. We believe that we have a shield to keep it away and it is stronger. Rest well. Thanks to Dr. Bob for being available as always! I hope today finds you feeling stronger. Charlie's poem was beautiful and so telling of what you experience every Tuesday. I know that you missed your dose of Mattie while laying in bed. These are the times when it is hardest to stay away from the pain."

WHY ME? by Nancy Heller Moskowitz

I often asked, Why me?
Why do I sit here without my child,
Not being able to hold him, to make it all better.
Why me? Could there be another way?
In my head, I know I did all I could,
My heart says that's still not enough.
Why me? I ask and no one has an answer
An answer that will satisfy this feeling.
I wait and wait, hoping for some relief.
It comes in drips, like a leaky faucet.
I am comforted that many understand,
I wait for an answer,
Not knowing when or whether it will come,
No one knows why it was me!

Tuesday, June 29, 2010

Tuesday, June 29, 2010 -- Mattie died 41 weeks ago today.

Tonight's picture was taken in March of 2005, at Butler's Orchard in Maryland. Mattie was almost three years old in this picture. We took him to the Orchard in celebration of Easter, and to attend their "Bunnyland" day. Mattie instantaneously gravitated to the John Deere ride on tractors. At that time in his life, anything with wheels was appealing.


Poem of the day: Tuesdays by Charlie Brown

Another Tuesday comes
And it will go
And another will arrive
Like an endless series of waves
Upon the beach
And time will erode the grief
But also fade the memories
Until they are as gently softened
As the photos in my mother's album
I want the magic that will
Keep them fresh
While dulling the grief
That makes them hurt
Tuesdays mark another week gone.


It is indeed another Tuesday. A Tuesday which marks the 41st week of Mattie's death. I woke up today not feeling well at all. I am running an 101 fever, have a sore throat, congestion, a cough, and clogged ears. My throat is so sore, that I can barely swallow. I attempted to get up, but it was a futile process, so I remained in bed the whole day. My eyes hurt and therefore I couldn't even read. I just listened to the TV all day long.

While in bed, I could see pictures of Mattie on my desk staring back at me. I think when you are not feeling well, you are more vulnerable to emotions. So periodically today I landed up crying as well. Tuesdays are naturally hard days for me and compounding it with feeling ill, made for a very challenging day.

I recalled that in the past when I wasn't feeling well, Mattie would run in and check on me. He always wanted to give me hugs and snuggle close, because to him that was the best medicine he could offer. I missed that "medicine" today and reflected back on how it felt to have him near me.

In the midst of not feeling well, I received e-mails from my friend Junko, and text messages throughout the day from Ann. By around 3 or 4pm, I decided I most likely wasn't going to get better without antibiotics. So I text messaged Dr. Bob. As my readers know Bob was Mattie's amazing surgeon, however, since Mattie's death, Bob has become my first line of defense in the medical world. I told Bob my symptoms and in minutes he prescribed something for me. I am so grateful to be able to turn to Bob, because in all reality I had no energy to make it to my doctor's office.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am so glad you took some time out for yourself and that Junko was able to help you do that. I was captured by your discussion of the massage and the therapist's breathing technique. Part of mindful practice is paying attention to one's breath. To slow down and even out your respiration so that your inhalations and your exhalations are even and measured. It is amazing what concentrating on that does for your focus and level of awareness. The body responds to this calming focus and then the mind comes along with it. It takes practice but it is a wonderful skill to learn. I am glad Peter is in a position to be able to allow you to take this time off. A sabbatical from work is a good way to take time to evaluate and find a new focus for your energy. I hope as you are working through all the things that battling cancer has loaded in your "backpack" you find meaningful things to do going forward. As I practice today, I send you my energy to help you continue to sort through all that you are carrying along with you. I hold you gently in my thoughts."

Monday, June 28, 2010

Monday, June 28, 2010

Tonight's picture was taken in November of 2002. Mattie was 7 months old. Ironically I captured Mattie in a carrier, however, I assure you this was a RARE occurrence. Mattie did not like to be immobilized in any way, and really disliked this carrier, his stroller, and his infant swing. We learned early on that Mattie preferred having his feet touch the ground! I remember buying Mattie this puppy dog hat in the picture, and it was one of my favorite hats on him.



Poem of the day: An Ocean of Grief by Ferna Lary Mills

I cautiously watch the water as it moves along the shore
creeping closer to the sand around my feet.
Beyond the crashing waves, where the water is deepest green
the ocean mirrors the depths of my grief.
My grief is like the ocean, sorrow coming in like waves,
sometimes gentle like a ripple on the sea.
Other times it just engulfs me with crushing waves of sadness
and undertows of despair pull down on me.
Some days I wade out in it, splashing memories with my feet,
recalling days of sunshine on my face.
Stepping through the foamy edges never venturing out so far
that larger waves can threaten their embrace.
Then when I least expect it this freak of nature soaks me
in reality so painful that I fall.
The sorrow and the anger that I've fought with day to day
surge through me in a tidal free-for-all.
One day when I'm much stronger and my grief is not so new
I'll swim just like I used to do before.
I'll take pleasure in the memories,
and tread water in those places
that we can't share together anymore.

I had the wonderful opportunity to spend the day with my friend Junko. Junko is Kazu's mom, and many of my faithful blog readers know that Kazu and Mattie met during summer camp at their school. I do believe that some things happen for a reason. Mattie was destined to go to camp before his kindergarten year and meet Kazu, and likewise, in the process I was supposed to meet Kazu's parents.

Those of you who have been on this cancer journey with us for some time, know that Junko would visit me often while Mattie was in the hospital. She would bring me some of my favorite salads (and chocolate treats!) and also in the process give me a massage. I know the hospital staff seemed overjoyed when Junko was around, because they felt that getting me out of Mattie's room and providing me with some moments of relaxation were imperative.

Junko took me to a spa in Washington, DC today. Though she introduced me to this spa several months ago, I never had the opportunity to go with her. So this morning Junko picked me up at my home, and we spent about five hours together. I certainly have had massages before, but Junko walked me through the process of how to prepare to relax prior to having the massage. We landed up sitting in an eucalyptus steam room together. We chatted and breathed in the wonderful aroma, and then moved into a sauna room. It was SO hot in the sauna room, that I asked Junko to read the thermometer in the room. It read 168 degrees, at which point, we got up and walked out of the room since we felt as if we were going to get cooked in there.

I would say I have always had a hard time relaxing, but post-cancer, it is virtually impossible. My mind is always on. However, the massage therapist I met today was truly a gem. I told Junko that I never met a therapist who took deep breaths while giving a massage. I could easily hear her! As first when I heard her doing this, it caught my attention, but by the next breath she took, two things happened, first I felt that she was relaxed and in tune with her job, and second, I began to be in tune to relaxing and trying to take deep breaths myself. By the time Dorothy finished with me, you could visibly see I was relaxed. Too bad I can't take her and the spa home with me, because I think the art of relaxing and clearing one's head are very therapeutic.

After the massage, Junko suggested we sit back in the steam room. We sat, drank water, and continued chatting. Spending a morning at a spa in many ways can be a very intimate experience with a friend, because it is uninterrupted time, time spent talking, sitting, and even chatting side by side as we were blow drying our hair. I am not very good a slowing down at times, but Junko timed things so we weren't rushed and that we could just appreciate the experience. Which I did!

We had a wonderful lunch together at the Four Season's, and we talked about so many subjects. I have no idea why Mattie got cancer, and I have no idea why he had to die. But one thing Mattie's illness did do, was it connected me with people who have altered my life, and continue to support me in incredible ways. I naturally would prefer to have Mattie in my life and to not have experienced cancer, but what I am sure of is that cancer was a wake up call of grand proportion. As I said to Ann yesterday and Junko today, cancer has caused me to take a moratorium from life. I am very fortunate that Peter allows me this time to try to cope with Mattie's loss in any way I can, which means not working, and not meeting most of the other mundane responsibilities that we face on a day to day basis. By having this moratorium, I can actually chose who I want to spend time with, what I want to do with my time, and reflect on my life and our lives together. It is my hope that during this time of reflection it will help me regain strength to carry on.

When I got home, I saw Peter had left me a message. I could hear that he sounded quite sick, and since it was pouring out, I jumped into the car and picked him up at work. I tried to get him to rest this afternoon, but when you are not feeling well, it is easy to become restless and unable to sleep. Naturally my biggest fear with his cough and congestion is that this is something he picked up in his journey to Africa. So I am watching him closely.
 
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am glad you got away for a little while even though you know as I do that you can't leave grief behind for long. I understand what you are saying about the ocean; I grew up near the ocean and would go and walk the beach when I had things to think through and even now the ocean has a major part when I do visualization/ meditation. I read what you said about the feel of the sand and the sight and sound of the waves but what brings it together for me is the smell of the salt water. I am pleased that you enjoyed your time and that you could acknowledge when you were overwhelmed and that you could find your own space. As I practice today I will send you my energy to help you continue your search for that space of serenity within that comes when you need it most. I hold you gently in my thoughts."

Sunday, June 27, 2010

Sunday, June 27, 2010

Tonight's picture was taken in January of 2009. Mattie was at his "girlfriend's" 7th birthday party. Charlotte made Mattie feel special on that day, and wanted him sitting right by her side. I was happy that Mattie was between treatments at that point, and could attend the party. I felt this picture was appropriate to post tonight, since I just got back from the beach, where I stayed with Charlotte and her family. Having these special moments with Mattie's friends is important to me, and Charlotte's mom, Ellen, and I had an opportunity to reconnect. Ellen and I met each other during the first week Mattie was in kindergarten and we became friends. Ironically, our children also met each other that first week in kindergarten class and immediately gravitated to each other.

Poem of the day: I Miss Your Laughter by Nicholas Gordon


I miss your laughter, fun, and gentleness.
I miss the things I used to do for you.
I miss the time, now filled with emptiness,
When each day was a stage for something new.
I miss your love, though mine for you remains,
A passion with no outlet to the sea,
A teardrop in a desert, that contains
What's left of my maternal ecstasy.
I miss your presence, like a silent chord
That anchored even solitude in grace.
I miss, for my love's labor, the reward
Of seeing some small pleasure in your face.
All these I miss, and yet they are all here
Within my heart, far more than I can bear.

I returned this evening from Bethany Beach, Delaware. I have wanted to visit Bethany Beach for years, but never had the opportunity. I am thankful to Charlotte's family and Ann for making this possible. We had a lovely day at the beach on Saturday, and it was fun to see all the kids connecting with each other and enjoying the beach and beautiful surroundings. Bethany is a quiet and family friendly beach and being only 3 hours away from Washington, DC makes this a very doable trip. Ellen and Jeff, Charlotte's parents, opened up their house to all of us and were wonderful and caring hosts. After spending several hours at the beach yesterday, we took the kids to a carnival at Rehoboth Beach, Delaware. Rehoboth has a very different feeling from Bethany. I went into the carnival with the kids for a short period of time, and then being around so many children and so much noise was simply overwhelming for me. So in those instances, I remove myself. I know that Ann and Ellen suggested I stay back at the house, but I really did want to see what Rehoboth looked like, since I have heard about it for years. While the kids were on the rides, I walked the boardwalk and sat on a bench and stared at the ocean. I have to believe that people who live by the water are simply healthier. If not physically than mentally. Hearing the waves, feeling the sand, seeing the birds, and watching the water and waves are so therapeutic. Though we were there for one night and two days, the image of the water will remain in my mind for some time.

On Saturday night, after dinner, we walked around their neighborhood and spotted several bunnies. That was a real treat. As it got darker, we took the kids back down to the beach with flashlights. They wanted to see the ghost crabs that come out at night by the shoreline (something Peter did with Mattie on numerous occasions in the Outer Banks, NC). I really do not like walking on the beach at night. It is simply eerie to me, and the water looks inky. However, there was a full moon out (my Mattie Moon), and with a death grip on Ann's arm, I managed through the process. Somehow among all of us on this adventure, we landed up hysterically laughing as we were looking for crabs. A moment in time, I will not forget anytime soon. We were quite successful and spotted many crabs, and watched them run back and forth from the water.

Today, I woke up early and sat outside, reading a book and sitting on a hammock. It was the quintessential feeling that told me I as at the beach. I then went for a walk with Ann on the beach, but since it was SO hot, we did not last very long in the hot sun. I am now reading, My Sister's Keeper. It is a book told from a teenager's perspective. But not an ordinary teen, she was conceived for the sole purpose to be a bone marrow donor for her sister who has leukemia. As I was reading the beginning of the book, the mother in the story describes how she learned her daughter had cancer. In all intensive purposes, it could have been me writing this chapter, because I related to it word for word. It captured the feelings and the numbness beautifully.

I want to thank many of you who wrote to me and let me know that you appreciated hearing Peter's perspective and insights last night. He is a wonderful writer, and though he remains silent from the blog, he too struggles with all the emotions, fears, struggles, and challenges I write about each day. I am just happy he had the opportunity to share his thoughts with you directly. I would like to share some photos with you from my trip to Bethany Beach.

Abigail, Charlotte, and Ann are burying Lexi and Katie in the sand!

The final product! From left to right: Charlotte, Lexi, Abigail, and Katie.

Our Bethany Girls.
From left to right: Abigail, Katie, Charlotte, and Lexi.

Ann snapped a picture of Abigail and I. Abigail and Charlotte were collecting rocks and sea shells. With each find, they could come and show me their prizes. I am not sure how this dynamic actually happened, but I enjoyed participating with both of them as they were having fun and sharing in the excitement of collecting!



I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Peter, thank you for the opportunity to "hear" your voice. I know it is really tough to do as I watch Vicki do it day after day with grace, love, sadness and sometimes humor. Thank you for acknowledging what a gift this blog is to all of us although it is a gift we would rather not have had to receive just as you and Vicki would rather not have given it. Vicki is truly a wonderful educator and you are the rock that she supports herself on. We all need the reminder that the "rock" too has feelings and grieves. As I do for Vicki each day, I send you the energy of my practice to help you; I hold you both gently in my thoughts."

Saturday, June 26, 2010

Saturday, June 26th, 2010

Tonight's picture is obviously out of season, but you will read later why I chose this picture tonight.

Hi everyone, it is Pete writing tonight and not Vicki.  This is just a one time "guest" appearance, so please do not despair, as Vicki will return tomorrow night to make up for me covering tonight.  Vicki has entrusted me with writing the blog tonight, so while I will put something down in print, I will not try to compare it to what Vicki normally does. So have patience with me as your regular girl will return tomorrow.

Vicki went to the beach early this morning with her friend Ann and a few of her kids, to go visit Ellen and Jeff, Charlotte's parents, at their beach house in Bethany, DE.  Vicki is staying there tonight and will return tomorrow.  I chose to stay home as I need to catch up on work and personal items that I could not do while traveling these past weeks in Africa.  I am sure Vicki will detail her trip to the beach tomorrow night, so stay tuned.

I do not have much to say, but I did want to make a few comments. Vicki writes this blog every single day and has since the beginning of Mattie's diagnosis.  It is a labor of love and a superhuman effort that she makes each night to document our lives, our lows and our loses.  Vicki is truly remarkable in her ability to process the emotions of the moment, the events in a given day, the people who transverse our existence and does so while drawing out incredible insights and helping us to learn a little something from each interaction.  Most people have a hard enough time just trying to communicate with each other, and Vicki does this as well as pouring her heart and soul into this blog every day.  So, my hat goes off for Vicki.

I will selfishly take this chance to remark at how wonderful Vicki truly is, and what an inspiration she is to me and hopefully to all those who come here regularly to read about Vicki's day.  I read the blog every day myself, and although in most cases the stories are about her, and Mattie, and me and our life now without Mattie, I myself learn a lot from her blog.  To me, that is not just a skill, but indeed a talent, and I feel fortunate to have her and her many talents in my life.  

Vicki said in one posting recently that Mattie was one of her greatest teachers.  Mattie was indeed wise beyond his years, an old soul as many have said, but he truly touched the lives of all those he interacted with, which was true both before and after cancer.  I attribute the talent that Mattie had to Vicki, as they are in many ways of like mind.  And although Mattie is not with us physically any longer, I know he will forever be a part of me, as Vicki will always be a part of me.  Vicki is a born educator and teacher of the heart and soul, and she reminds me each day of how important it is to be present in the moment, and to learn from it.

To those readers who come here regularly or infrequently, I think you will agree that a part of Vicki will always be with you as well.  Whether that is through the pain of watching something fight for their child's life and lose the battle, or through helping to remind you of what is important or as an aid when thinking of your priorities in life, Vicki has hopefully touched you in some way and helped you, even if just a little, to better understand things.  That was Mattie's gift, and that is Vicki's gift as well, and to both of them, I am forever in their debt. 

The memories of Mattie, and the friendship of Vicki do make my life meaningful, and although things now are very depressing, morbid and bleak, I know that I have Vicki, which gives me a reason to go on to the next day.  Losing Mattie has irrevocably changed every fundamental thing about me, and most of those changes are not for the better.  Each day is an incredible struggle just to go on and live, but I do so because of Vicki and a visceral conviction to keep Mattie's memory alive.  Some days are not as hard as others, but no day is easy.  Vicki and I remain functional since that is the expectation in society, as no one wants to deal with dysfunctional people.  However, immediately under the surface, we are in great, great pain. 

Although Mattie died 291 days ago, I feel that it has been both a moment and a lifetime since I last held my bear.  That overwhelming feeling of grief, loss and depression remains with you forever, as if it is a fifth appendage that you sometimes are consciously aware of or not, but that is attached to you always.  So if sometimes I appear to be acting weird or awkward or haven't responded or "been myself", please know that I am just having a hard time.  I wish this on no one as it is truly an unspeakable and indescribable misery of an existence.

On a different note, I told you earlier that I would reveal why I selected tonight's picture.  If you scroll back up you will see a picture of a family of three.  Notice how everyone is smiling, looking good, it's taken in a sunny warm location (Ft. Lauderdale, FL), and there is a smiling 5 year old on his father's back with the whole world ahead of him.  Notice behind the smiles of the parents that they too have a bright outlook in their life as they nurture their son, and are full of joy as they anticipate the possibilities of what their child might go on to do, and the wonderful future moments as they grow old and watch their child continue growing and accomplishing great things.

I remember when this shot was taken, and the great times we had while making this (and other) memories on that day and date.  But that is all I have left now, memories of what once was, and now will never be.  And all I can say to you, is make the most of every moment you have with your child and children, and take the time to be present for them, for you.  Be understanding and be firm, but most importantly, be with them.  Take nothing for granted, no matter how meaningful or insignificant you may perceive it to be, because as much as we think we are in control of our lives, we really are not, and we do not know what tomorrow will bring, so make the most of today.

Thank you for putting up with me tonight.  I know I am blog "rookie", but hopefully I provided a little bit of a different view tonight.  Again, I have to applaud Vicki as this is just not easy to do, and I can only imagine what it takes to do this every day.